{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,3]],"date-time":"2026-10-03T07:53:00Z","timestamp":1791013980926,"version":"4.1.0"},"reference-count":66,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,9,29]],"date-time":"2026-09-29T00:00:00Z","timestamp":1790640000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,9,29]],"date-time":"2026-09-29T00:00:00Z","timestamp":1790640000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Norwegian Association for Children\u2019s Palliative Care"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Fathers\u2019 experiences are seldom reflected in paediatric palliative care research, and existing studies predominantly focus on malignant conditions. Less is known about fathers\u2019 experiences with healthcare and related support services when caring for a child with a progressive life-limiting condition. These conditions are often marked by long and unpredictable trajectories and complex care needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim:<\/jats:title>\n                    <jats:p>To gain an in-depth understanding of how fathers experience healthcare and related support services while caring for a child with a progressive life-limiting condition.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A qualitative interview study grounded in phenomenological hermeneutics.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting\/participants:<\/jats:title>\n                    <jats:p>Thirteen Norwegian fathers of children aged 1\u201318\u2009years with a progressive life-limiting condition lasting \u2a7e12 months. All children lived at home and received varying levels of respite or in-home care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>\n                      Through the analysis, we developed three themes: (1)\n                      <jats:italic toggle=\"yes\">Being David against Goliath\u2014battling the system<\/jats:italic>\n                      , (2)\n                      <jats:italic toggle=\"yes\">Being father to a child too complex for tick-box care<\/jats:italic>\n                      and (3)\n                      <jats:italic toggle=\"yes\">Striving for equal recognition as caregivers<\/jats:italic>\n                      .\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Fathers caring for a child with a progressive life-limiting condition experience fragmented healthcare and welfare services, which place substantial advocacy and coordination burdens on families. More flexible, coordinated and father-inclusive paediatric palliative care pathways are needed to recognise parental expertise and support both parents as equal caregivers.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/02692163261486220","type":"journal-article","created":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T04:27:36Z","timestamp":1790742456000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Beyond standard care: Fathers\u2019 perspectives on healthcare and related support services when caring for a child with a progressive life-limiting condition\u2014A qualitative study"],"prefix":"10.1177","author":[{"ORCID":"https:\/\/orcid.org\/0009-0006-9301-9027","authenticated-orcid":false,"given":"Marianne","family":"Sjuls","sequence":"first","affiliation":[{"name":"Faculty of Health and Sport Sciences, Department of Health and Nursing Science, University of Agder, Kristiansand, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9439-380X","authenticated-orcid":false,"given":"Mette Spliid","family":"Ludvigsen","sequence":"additional","affiliation":[{"name":"Faculty of Nursing and Health Sciences, Nord University, Bod\u00f8, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5470-8686","authenticated-orcid":false,"given":"Liv","family":"Fegran","sequence":"additional","affiliation":[{"name":"Faculty of Health and Sport Sciences, Department of Health and Nursing Science, University of Agder, Kristiansand, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6529-0745","authenticated-orcid":false,"given":"Nastasja","family":"Robstad","sequence":"additional","affiliation":[{"name":"Faculty of Health and Sport Sciences, Department of Health and Nursing Science, University of Agder, Kristiansand, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,9,29]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"crossref","unstructured":"Sjuls M Ludvigsen MS Robstad N et al. 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